Death certificate data and causes of death in patients with parkinsonism

https://doi.org/10.1016/j.parkreldis.2017.05.022Get rights and content

Highlights

  • PD was cited in a third of death certificates, usually not as a cause of death.

  • Death certificates may be limited and unreliable sources of data in PD.

  • Most deaths occurred in moderate stages, due to causes seen in general population.

  • A proportion died with advanced PD due to complications of the disease per se.

  • Causes of death in advanced PD and all atypical forms of parkinsonism are similar.

Abstract

Introduction

Assessment of variables related to mortality in Parkinson disease (PD) and other parkinsonian syndromes relies, among other sources, on accurate death certificate (DC) documentation. We assessed the documentation of the degenerative disorder on DCs and evaluated comorbidities and causes of death among parkinsonian patients.

Methods

Demographic and clinical data were systematically and prospectively collected on deceased patients followed at a tertiary movement disorder clinic. DCs data included the documentation of parkinsonism, causes, and place of death.

Results

Among 138 cases, 84 (60.9%) male, mean age 77.9 years, mean age of onset 66.7, and mean disease duration 10.9 years. Clinical diagnoses included PD (73.9%), progressive supranuclear palsy (10.9%), multiple system atrophy (7.2%), Lewy body dementia (7.2%) and corticobasal degeneration (0.7%). Psychosis occurred in 60.1% cases, dementia in 48.5%. Most PD patients died due to heterogeneous causes before reaching advanced stages. Non-PD parkinsonian patients died earlier due to causes linked to the advanced neurodegenerative process. PD was documented in 38.4% of DCs with different forms of inconsistencies. That improved, but remained significant when it was signed by a specialist.

Conclusions

More than half of PD cases died while still ambulatory and independent, after a longer disease course and due to causes commonly seen in that age group. Deaths among advanced PD patients occurred due to causes similar to what we found in non-PD cases. These findings can be useful for clinical, prognostic and counseling purposes. Underlying parkinsonian disorders are poorly documented in DCs, undermining its' use as sources of data collection.

Introduction

Despite its' significant relevance, data regarding cause of death and the relationship between neurodegenerative disorders and the possible terminal event have been overlooked over the years. In the case of Parkinson's disease (PD) and other parkinsonian disorders, gathering reliable sources of information is complex as mortality data of larger cohorts rely partially on conclusions derived from death certificate (DC) registries and other formal databanks [1]. One major limitation and source of bias in this context is the omission of the parkinsonian diagnosis on the DC. As death is the ultimate consequence of a mosaic of multiple sequential and often interrelated clinical events, picturing it objectively, necessary in these documents, is problematic [2]. Discrepancies may eventually lead to failure to recognize the potential downstream impact of comorbidities, their prognosis, and actions for supportive care and general health interventions.

The objectives of this study were firstly to evaluate records of deceased parkinsonian patients, assessing how the underlying degenerative disorder was documented on the DC. Secondly, to analyze the causes of death as described on the DCs, their potential correlation with the parkinsonian disorder, other demographic data, clinical features and comorbidities.

Section snippets

Methods

Data from deceased parkinsonian patients previously followed at a large tertiary movement disorders clinic were collected between January 2009 and January 2015. The local ethics committee approved the study protocol. All patients were regularly outpatients of the clinic prior to death, seen every three months according to a standard protocol. Clinical diagnosis was determined during their lifetime by the first or senior authors, both movement disorders specialists. To make the data analysis

Results

During the six years of the study period, the cumulative number of patients with parkinsonism followed regularly at the clinic was 1028. The cumulative number of deaths reported to the institution reached 207 (20.1%) during this time. Mean follow-up time was 35.3 ± 27.9 (range 7–117, median 29) months. Complete data was obtained from 138 cases. Eighty-four (60.9%) were male; mean age was 77.9 ± 7.9 years (44–95), mean age of onset of parkinsonism was 66.7 ± 9.8 years (35–92), and mean disease

Discussion

Our data shows that PD is under-recorded on DCs, consistent with previous studies [1], [2], [11], [12], [13]. PD was mentioned in 36.2% DCs, more commonly as an “other cause of death”. Death in chronic disorders portray the net effect of a number of concurrent conditions [14], therefore, the multiple items of a document such as the DC may include a seemingly open and incohesive list of diseases, events and co-morbidities. In any event, the chronic degenerative underlying disorder should ideally

Authors' contributions

M Moscovich: conceptualized study, analyzed data in study, drafted manuscript, revised manuscript G Boscheti: drafted manuscript, revised manuscript A Hassan: revised manuscript H A Teive: revised manuscript A Moro: revised manuscript R P Munhoz: conceptualized study, performed statistical analysis, drafted manuscript, revised manuscript.

Disclosures

All authors report no disclosure.

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